Can't get rid of my fever!

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Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 1/6/2017 7:07 PM (GMT -6)   
Hi everyone.

I've had a fever since 9/20. I was bit by a tick some time in August during a backpacking trip in California. I got sick in early September with fever and paralysis from waist down (keep in mind I am a marathon runner and exercise fanatic). I tested positive through Igenex for Lyme, Babesia Duncani, Bartonella, Borrelia hermsii (Relapsing Tick Fever), erhlichia, r rickettsii. It's been a horrible past few months and I won't go into all the details. I started on doxy on 10/8. Then at the end of November started on Mepron, Azithromicin, Ceftin along with the Doxy. I've had a few days a couple weeks ago where I thought things were getting better with a lower fever. But it has since come back with a vengeance. In addition, I've had on and off chest pain that is quite scary. All my EKGs have been perfect. There are NO doctors in Chicago who have a clue about these infections. They are all terrible. I think most of us suffering from Lyme and the infections know a lot more than most doctors.

I am wondering if anyone has any thought or insight as to what is making my fever so persistent. Is it Babesia? Possibly Bartonella?

I can't help but go to a dark place thinking maybe I have Lyme carditis or something similar causing the persistent fever and chest pain.

Are IV antibiotics my only hope? This is so scary and depressing. And the worst part is that I feel like I am totally alone with zero medical support. The LLMD I have seen if very difficult to reach if you are not right in front of her at an appointment. Only the nurses respond to email two or three days after I write.

This is my first time posting here. Just wondering if anyone else has had a similar experience with persistent fever and what finally broke the fever and kept it away. Thanks so Much! Wishing you all quick and speedy healing.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 1/6/2017 7:37 PM (GMT -6)   
Hi, Evanston1 - welcome to our community!

The fever can be lyme...or bart...(not sure, but maybe Babs, too?)

No, IV antibiotics are not your only hope. Keep in mind you have a fairly recent case of lyme and co's.
It's only been 3 1/2 months for you...you are one of the lucky ones that way.

I haven't had the fever - not one of my symptoms...but hopefully one of our members can share some information with you...how long it lasted, etc.

We encourage all new members to take a look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

Are you detoxing? That is something that is very important when treating lyme. You need to flush out the toxins that are created from the bacteria die-off.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 1/6/2017 7:39 PM (GMT -6)   
What have the nurses said about your concerns about your heart?

If you are worried..you should have it checked out. Can you go to your regular Dr. about your heart?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3827
   Posted 1/6/2017 8:37 PM (GMT -6)   
Rocky Mountain Spotted Fever is notorious for recurring fevers, too. I would run them for months on end, and only barely knocking them a little lower with the aspirin half of my pain pills.

happyjo
Veteran Member


Date Joined Sep 2014
Total Posts : 1406
   Posted 1/7/2017 7:46 AM (GMT -6)   
1st round of this nightmare, it was thought to be a case of EBV going on for too long (until other reasons were discovered). During this time, I had a long term low grade fever-1 whole year. For me, even a slight fever just throws mind & body off. Abx added finally did help. But also know that a fever is the body's way of burning off bad stuff. That is also the theory behind saunas & such to bring the body to a temperature inhospitable to bacteria/buggers within.

That's quite an arsenal of drugs you are on. Just make sure that those treatment drugs are not having side effects, such as heart (tho the abx could be effectively hitting things). Push the doctors if the heart problems continue as your concerns are valid.

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 1/7/2017 10:04 AM (GMT -6)   
Thanks for all your responses! I am having a cardiac MRI on Monday. I had an echocardiogram last week that looked "suspicious" so that's why I am having a follow up MRI. My hunch is that this is Bartonella endocarditis. I don't think it's from the Lyme because I'm on meds for Lyme. And from what I've read, it seems that Bartonella and Lyme would be the main culprits of cardiac involvement. And if it is Bartonella endocarditis, I will have some very rough roads ahead. The treatment is a very terrifying medication called gentamicin. I am trying to just take it one moment at a time and not jump to conclusions.

This whole experience is truly mind blowing! In one moment, I was on top of the world in my prime loving my life with my awesome husband and three kids backpacking in California during a summer vacation. And since, I've been beyond ill. And the worst part of it has been the doctors who treat these infections with two weeks of just doxy. I hate to think of how many people have died in the hands of these incompetent doctors who refused to treat differently from the way they were "trained" despite the patients' persistent ongoing illnesses.

I still do not understand what the controversy is. To me, the equivalent treatment of the medical commmunity would be to not recognize most cancers.... and the cancers that they do recognize would be treated one time with a two week run of chemo. Period. Nothing more. Can someone explain what the "controversy" is all about?

This is real stuff, real infections, real illness. With my own eyes, I saw a spirochete swimiming in my blood along with a Babesia infected red blood cell from blood microscopy done with a finger prick in my doctors office. It was the coolest and grossest thing ever. But it was real. Legit. So why would the greater medical community not recognize it??

Sorry to be ranting. I'm just stunned by this whole experience. I am strong and I will get through this. I have everything to live for and I will come out on the other side standing. But.... ***?!?!?

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2122
   Posted 1/7/2017 11:10 AM (GMT -6)   
Welcome and you found a good place here.I am also a newer member. I have found so much information and support here. I hope you get some relief from your symptoms. Take Care and best of luck.
Sincerely, Jo

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/7/2017 11:33 AM (GMT -6)   
Hi Evanston,
Welcome to our community! I'm so glad you found us.

For the issues concerning the 'divide' on Lyme, you might find these articles helpful:
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/

No one knows for sure why all the controversy, but I'm not usually one to believe conspiracy theories, but this time, it really makes me wonder what "they" have to hide (CDC, IDSA & more) since they are fighting so hard to make it extremely difficult to not only get a positive test (no new tests are being approved that aren't based on antibody tests, which are not accurate for these infections), but they are not recognizing the seriousness of these diseases either. Not to mention that there are many states that won't even recognize that Lyme disease is being spread in their state. These are only the tip of the iceberg for trying to understand why there is so much controversy with these infections.

But, that's why these forums are so important. Lyme patients come here to not only get, but to provide support for others going through similar experiences with the same infections. It's the only way we can help ourselves be as informed as possible and learn how to heal our bodies. Even the LLMD's often don't know as much as the collective knowledge on a good Lyme forum. That's thanks to the members that are willing to do research on their own, and to watch for other Lyme patients that are successful and finding out what they did to see if it would help them - then sharing it with others.

I would venture out to say that a good Lyme forum is essential to healing these infections.

Keep asking questions, and keep reading whatever you can. We are here to help just as much as we can!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 1/7/2017 1:00 PM (GMT -6)   
Evanston1 said...
Thanks for all your responses! I am having a cardiac MRI on Monday. I had an echocardiogram last week that looked "suspicious" so that's why I am having a follow up MRI. My hunch is that this is Bartonella endocarditis. I don't think it's from the Lyme because I'm on meds for Lyme. And from what I've read, it seems that Bartonella and Lyme would be the main culprits of cardiac involvement. And if it is Bartonella endocarditis, I will have some very rough roads ahead. The treatment is a very terrifying medication called gentamicin. I am trying to just take it one moment at a time and not jump to conclusions.

This whole experience is truly mind blowing! In one moment, I was on top of the world in my prime loving my life with my awesome husband and three kids backpacking in California during a summer vacation. And since, I've been beyond ill. And the worst part of it has been the doctors who treat these infections with two weeks of just doxy. I hate to think of how many people have died in the hands of these incompetent doctors who refused to treat differently from the way they were "trained" despite the patients' persistent ongoing illnesses.

I still do not understand what the controversy is. To me, the equivalent treatment of the medical commmunity would be to not recognize most cancers.... and the cancers that they do recognize would be treated one time with a two week run of chemo. Period. Nothing more. Can someone explain what the "controversy" is all about?

This is real stuff, real infections, real illness. With my own eyes, I saw a spirochete swimiming in my blood along with a Babesia infected red blood cell from blood microscopy done with a finger prick in my doctors office. It was the coolest and grossest thing ever. But it was real. Legit. So why would the greater medical community not recognize it??

Sorry to be ranting. I'm just stunned by this whole experience. I am strong and I will get through this. I have everything to live for and I will come out on the other side standing. But.... wtf?!?!?


Even though you are on meds for lyme, that doesn't rule out that the heart issues being caused by lyme. You've only been on lyme meds for a couple of months. It could still be lyme.

Usually, bartonella is treated with Rifampin or Rifabutin (more expensive) combined with another antibiotic.
If Gentamicin is a 'terrifying' drug...then maybe it's only used as a last resort. I don't know anyone who has been treated with it. Maybe have a discussion with your LLMD and ask about Rifampin or Rifabutin

There are also the fluroquinolones that can be used to treat Bartonella. I have read they are more effective than the Rifamycins...but they do come with a black box warning - for risk of tendon rupture...and also risk of peripheral neuropathy. Some LLMD's do prescribe the fluoroquinolones, but many LLMD"s don't.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to

Tanya844690
New Member


Date Joined Jan 2018
Total Posts : 2
   Posted 4/18/2018 7:31 AM (GMT -6)   
Hi Evanston,

I hope your fever has gone? I was wondering if you ever found out what was causing your fever and if anything worked? I’ve had low grade fever for 6 months now and certain antibiotics are not working. Would love to hear from you. Tanya

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 4/18/2018 10:42 AM (GMT -6)   
Hi Tanya, welcome to our community!

Are you being treated for lyme disease?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Tanya844690
New Member


Date Joined Jan 2018
Total Posts : 2
   Posted 4/19/2018 2:03 AM (GMT -6)   
Thanks Girlie,

Yes I got a weak positive on Elispot in February. Been on doxy since January but fever remains and new symptoms have started like burning aching, weak arms. Fun fun. This forum is great though. Trying to find a lyme literate doc but there aren’t many here in the UK.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 4/19/2018 3:10 AM (GMT -6)   
It sounds like you may have Bartonella (coinfection) as well.

I have a few options in the UK. If you're interested - you can send me an email.


We encourage our new members to read through the information in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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